I am 28 year old mom of a 2 year old boy. Was diagnosed with ADEM on september 11, 2016.
So far they say I am perfectly fine clinically, except that my MRI shows more lesions than when i was admittes to the hospital.
I have already went through high dose steroids, plasmapheresis ( 7 treatments), and now my neurologists said they will have me on IVIG for 5 days. I am not familiar with this treatment? They said it would be administered at home, for 6 hours straight for 5 consequtive days. Can anyone tell me their experience?
I personally feel fine except my emotions are overwhelming. After the first 2 plasma exchanges I regained mobility, learned to walk again, began feeding myself, and overall just went back to my normal self (physically). But i still feel i am sick because i cry a lot for no reason. It’s hard for me to control it. I am also on oral steroid prednisone - it was prescribed after i was discharged. I spent 2 weeks overall at the hospital.
Tell me, will it ever get better? I am so aggressive lately and just so hard to control emotions.
I am from NYC - treated in Lenox Hill hospital under Dr Miskin neurologist
Let me give you my brief history. At 55 years old, I had a neurovirus for almost 9 days. I woke up at the end of that with numbness, like when your feet go to sleep, up to my waist. The next day, it was up to my chest and traveling down my arms into my hands. My husband is a Chiropractor and ordered a ton of blood tests. Everything was negative. Long story short, I had a cervical MRI and the radiologist discovered the ADEM. I was in the hospital for 4 1/2 days on IV steroids. By the time I went to the hospital I had lost all function of my hands. The steroids took the numbness away, but I had to learn how to use my hands all over again. Now, 3 and 1/2 years later, I am doing well. It really took me 6 months to have good control of my hands, but I have permanent neuropathies in them 24 hours a day. My difficulty is with my fine motor skills, the major skills are fine. The point here is…I am in great shape compared to when I was diagnosed. Now, to address some of your issues.
Most of us, including me, have been left with some emotional, cognitive or such issues. My husband tells me my personality is a little different, although nothing we can’t deal with. Ex. I see much more black and white now, as a lot of gray previously. Now, I can really deal with things one at a time, versus multi-multi tasking. I am definitely more emotional and frustrate easier.
You need time and take one day at a time. You probably won’t know how much you will be left with for 6 months or more. Like I said, healing will be slow. I am lucky, because my symptoms weren’t as bad as some people. It sounds like you may be the same way. Keep this in mind, try and control your stress (I know that is easier said than done). Stress will only make matters more difficult. Always think about how you are today, versus yesterday or the day you were diagnosed. Take each and every improvement, no matter how small.